Jennifer's Journal

J Alexander Lassally  So have you been on a regime already or are you brand new to it?  I had no specific side effects from my course of it..... It worked very well. 

Jennifer Holly  Good to hear about a lack of side effects. I speak with my cardiologist today. Hopefully I finally will begin to fully recover from my surgery.

Kimberly Eisenhut  Jennifer, I will be having a consult with Dr Malaisrie soon about my tricuspid valve and now am concerned about the care I will get. I am already extremely anxious about all of this and now am having doubts about care I will get from Northwestern. You chould be able to directly contact the Team nurse and have a direct number to call to tell them what is going on. Do you have a cardiologist downtown? I have medicaid with blue cross and wondering what insurance you have if you dont mind sharing. Thank you and best wishes

Jennifer Holly  I am able to reach the team, but unable to get assistance that would actually help. I have a great Loyola cardiologist. The surgery itself was good and I would go to Dr. Malaisrie again because of the small incision and correct fit of the valve and excellent anesthesiologists. Just have a plan during recovery.

Rose Madura  Jennifer, it seems to me that you did get care and they referred you to the ER.  I had many issues for about 3 months after my surgery and was re-hospitalized four times.  My surgeon had released me after 4 weeks because his job was done - but he did visit me in the hospital each time I was there.  Our bodies don't like this surgery and react with inflammation which causes issues like you have described.  Hang in there.  Things will get better.

Grace Mason   Glad to hear you have had your pleural effusion drained Jennifer. Sounds like a very similar path to my own. My body reacted with lots of fluid buildup about 3-4 weeks post surgery, too. After some scans and talking with my cardiologist, he referred me to the ER. I also had a small pericardial effusion and a thorocentesis. The pleural effusion returned but was managed with diuretics and eventually steroids, after the initial draining. Both my pericardial effusion and pleural effusion resolved on their own over time. 
Hope you are feeling better and have a smooth recovery going forward.

Yumiko Ishida  I am glad you were eventually able to get the care you need. It is unfortunate that ER is frequently the only way to get proper care. My cardiologist sent me to ER multiple times, not necessarily because it was an emergency, but that was the only way I was able to get the care I needed. Doctors’ offices don’t have the kind of equipment and staff necessary to address certain conditions. Hope you feel better soon.

Grace Mason   Jennifer, I'm sorry to hear you are experiencing these symptoms. Have you talked to your cardiologist or PCP?
When I had issues after surgery my cardiologist told me to go to the ER because they could run more tests than he could order in a timely manner. I would check in with one or the other for another opinion.
I was told if temp above 101 for an extended period you should call doctors office.

Kimberly Eisenhut  Jennifer, I would keep contacting surgeons office, do not stop until you get answers. I am also a patient at Northwestern and I have spoken to Dr Malaisrie a few years ago about my tricuspid. I have not had surgery yet, but am now at the severe stage and truly would like to have confidence in the surgical teams at Northwestern. Please let us know how things go. Thinking of you today and wish you peace and better days ahead.

Grace Mason   At around 4 weeks I was experiencing night sweats and temperature just between 100-101 each evening. My ability to walk much distance became half what I could previously do comfortably. I similarly had a partially collapsed lung which was treated with a thorocentesis and furesomide, a diuretic. Eventually it resolved after several weeks. Are you taking diuretics and your doctor monitoring your atelectasis?

Yumiko Ishida  Welcome to recovery! Shortness of breath and fast heartbeat is normal. I suggest you use an oximeter to check your heart rate regularly. Mine was around 110 for a while, and it was uncomfortable but I was told that is high normal. I like to use an oximeter that has a little graph. You can get a smart watch that tracks HR, too, but I don’t find it to be necessary. If you were given guidelines on post-discharge activities, I would follow those. Most of us were told to walk everyday but you don’t want to over do it either. Rest when your body tells you to.

Grace Mason   I think fast heartbeat (and strong heartbeat - mine felt like it was shaking the bed right after surgery sometimes at night when I was still) as well as some weight loss(5-10lbs) are fairly typical post surgery. 

Not sure about shortness of breath... I would personally check in with surgeon/nurse about that.
I believe you should be walking often but not doing anything intensive. If you had your sternum cut open you should be following sternal precautions, so you wouldn't want to be doing repetitive activities with your arms. So, no sweeping and so forth. No lifting weights greater than 5 lbs per arm for a while.
If you weren't given instructions on discharge about how much activity you should be doing I would ask your doctors office for more information and guidance on that, as well as, the shortness of breath.

Jennifer Holly  Thank you for reporting on your experiences. I use both a pulse oximeter and kardiomobile. Tomorrow when the visiting nurse is here I will discuss my being ahort of breath. 

Rita Savelis  All very normal. It's still so early for you. So many things your body has to get used to. It's still healing.

Grace Mason   Jennifer I was also told to eat a lot of protein after surgery to help aid in healing because your body is burning extra calories while it's healing.

Marie Myers  I also lost weight after my surgery. (That is, once I lost the water weight gained during surgery.) I lost about 5 pounds also, which is a lot for a 108 lb normal weight. As I started eating again, I gained back to my normal size. The shortness of breath slowly disappeared as I regained my fitness. It is good to walk everyday, as guided by what your body tells you. I then started cardiac rehab in 3 weeks, and gained back my confidence at excercise.

Michael Ponzio  I’m home three days and am having same issues. Fast heart beat and extremely strong heartbeat so much that it keeps me awake most of the night. Hoping this subsides over time. I would definitely inquire about the shortness of breath. 

Jill Porter  I was short of breath for quite a while after my surgery. I believe it is definitely part of the recovery.

Robert Miller  I lost a considerable amount of weight after surgery, mostly due to lack of appetite. Being short on breath and having a faster heartbeat is common. Arrhythmia also happens often but usually goes away later on.  

Pamela Gregory  So glad you are feeling well enough to post on this site! I hope everything went smoothly and you get to a room today

Yumiko Ishida  You won’t need prescription meds while in the hospital, but you should have them with you. You probably need them before and after. The hospital gave me all the meds I needed while I was there, but nothing to take home unless it was something they newly prescribed.

Robert Miller  They will take care of all the new and existing prescriptions when you are in the hospital. But you should take them with you for before and after you are in the hospital. Get some pillows to put behind your back when sitting/sleeping in a recliner. Personally, I liked oversized clothing. Something like a cherry pit pillow is nice. I tended to get a stiff neck and such a pillow helps quite a bit (you stick it in the microwave to heat up). My wife likes my mom's cherry pit pillow (from real cherries, cooked in hot water to clean) as it retains heat longer than most other such pillows. 

Kimberly Eisenhut  Jennifer, I also go to Northwestern and I really do not think they will feel any different about your few pounds. I also have a high BMI and am currently losing weight for when I am told I need surgery which could be soon. Just cut the sugar and try to walk at least 5-7,000 steps if you are able. Just walking will help you. Also, I started to stop eating by 8p.m. and do not eat again until 10-11 a.m. It helps my body burn some fat if I do not eat for at least 14 hours. If you have any concerns reach out on MyChart with your surgical team and they get back to you quickly that way. I know the nurses on his team have no problem talking to you. I even had a call from one of them when I had some questions 2 years ago. YOu should get the direct number from them, itll help you feel more at ease being able to reach out to them whenever you need to, they are happy to help.

Yumiko Ishida  I suggest you ask your surgeon what type of exercises you are supposed to avoid. One of the cardiologists I consulted didn’t want me doing any heavy lifting, while others encouraged me to walk daily before the surgery. I had a foot injury that made walking difficult, so I got on a stationary bike instead. Doctors aren’t going to judge your weight. They just need to track it, like they need to track your blood pressure, heart rate, etc. Most people experience a new weight loss from surgery, so it’s probably good to have a little extra going in.

Jennifer Holly  Thank you for the support. Since my valve is causing symptoms no exercise is safe. I am having dizziness, ankle swelling, chest pain, and pressure. March 18th is my surgery so only a little more than a week. Hopefully you all are correct that the team will not judge me.

Kimberly Eisenhut  No they will not, their job is to fix your heart, not judge you. Just be sure to follow any directions and physiscal therapy afterwards, as that is what they will be following closely to make sure you have the best outcome. They care most concerned about outcomes for patients and want to do everything to make sure you have the absolute best one possible for YOU. Not anyone else, but you. You are an individual with individual challenges and needs, so do not ever judge yourself either. Do the best you are able and we are all here for you whenever you need to talk, vent or ask questions. You've got this Jennifer!

Jennifer Holly  Thanks for your encouragement! My husband and I watched your Ross video last night to prepare for the recovery road ahead. I

Richard Munson  One question i asked my heart surgeon before i said to get this done was whether there was a chance my heart would heal itself. The answer was no. Not knowing your current valve situation or what you mean by letting nature take its course it would seem like the same advice might apply to you. 

Jennifer Holly  Thank you. Yes according to my cardiologist, I have less than two years if I choose not to go through with the replacement. 

Richard Munson  Sounds like a no brainer to me. Get it done, then access whether your dizzyness symptoms improve. If not address it then. There are many reasons for being lightheaded. Dizzyness and fatigue however are 2 classic valve issue symptoms. If your oil pressure is low and you know your oil pump is bad, it might not be the cause but the odds are in its favor. My analogy of the day. Good luck. Don’t procastinate.

Michael Ponzio  Hey Jennifer from being part of this group and reading about everyone’s experiences, post operative  symptoms are for the most part temporary. But without the operation your symptoms won’t go away. Trust in God and get the operation. 

Rose Madura  Jennifer, I had similar surgery as you will have.  While it's no picnic in the park, it's doable. At age 59, I had mine and I feel so much better. That was over 7 years ago.  There were ups and downs in the recovery process but then, I  turned a corner and all is well now.  You will be in good hands at Northwestern. The odds of success are definitely in your favor.  God bless you on this journey. We will be here for you to answer any questions.  👍

Susan Lynn  Jennifer- The few month commitment to have surgery and heal is the best investment you can make in yourself. It's absolutely scary, but dying from heart failure is no picnic either. Please give more consideration to surgery. We did it - you can, too! We'll be with you every step of the way!

Valerie Allen  Jennifer, you seem to be sharing thoughts that we all too had in trying to come to terms with heart surgery. You are getting closer to the time where many just put it in the hands of the very skilled staff. That was a relief. If not having it was a good option, they would have told you. As Susan said, we understand and we’re with you! Go girl!

Yumiko Ishida  I second what all the others have said here. Post surgery dizziness is a temporary side effect in the overall scheme of things. I don't know the nature of your current dizziness, but most likely it will improve once you recover from the surgery itself. At least that has been my experience. Balance was a big issue for me after having a stroke (that was essentially caused by my faulty valve), and it was worse post surgery, but I was expecting it, and made sure to get help afterwards. Recovering from the neurological side effects of a surgery is very slow (I am just over a year out), but I can say with certainty that I am doing much better as a result of the surgery, both my heart and brain, because your brain needs to get its oxygen from your heart

Jennifer Holly  Thank you all for your support. I will consider your comments. At the end of today, I haven't called the surgery off, so I guess K will be going for it.

Kevin Hornaday  Facing surgery is scary, but my cardiologist talked me through the prognosis with and without surgery. At that point, it was a no brainer. The recovery won't be easy, but it will get easier every day. I pray for your full recovery and a fantastic update.

Kimberly Eisenhut  I never saw that! I will be having my tricuspid surgery there when the time comes. I will be asking my cardiologist about this next time I speak to her. Have you had your TEE done there yet? Thank you for the information. 

Kimberly Eisenhut  Who is your Cardiologist there if you don't mind me asking. Mine is Dr Vera Rigolin. Who will your surgeon be?

  I love Northwestern Chicago!! They saved my life. Picked up on so many things other practices had missed for a few years. 

They are very proactive in advising to do what is needed to obtain optimal cardiac health now. 

Others I have worked with wanted to take the wait and see approach for up to 6-9 months, while I continued to feei horrible daily.  Life is too short for that in my opinion. 

Best wishes! Please keep up posted. ❤️❤️❤️

  Just read this: “In 2023-24, U.S. News & World Report named the Northwestern Memorial Hospital cardiology, heart & vascular surgery program a top ten program in the nation (No. 7) and the highest ranked program in Illinois for 16 consecutive years.“

Jennifer Holly  Thank you for your responses. My surgeon is scheduled to be Dr. Chris Malasirie. My cardiologist is at Loyola. I chose Northwestern fbecause they are rated best in Illinois. Only the stroke risk is still concerning.